Vision of determination

Fla. teen going blind, but going all-out for marathon

October 11, 2007|By Roch Kubatko | Roch Kubatko,Sun reporter

As Edgar Suris' eyesight worsens and he contemplates a life spent in darkness, he also has a vision.

His feet are slamming the pavement of a strange city, his heart pumping faster than his legs. And as he struggles to pull air into his lungs and ignore the pain that begins to radiate through his muscles, he remains intent on proving something not only to himself, but also to anyone else who figures that going blind means no longer going places.

Suris will be counted among more than 14,000 men and women expected to turn out for Saturday's seventh Under Armour Baltimore Running Festival. He will be one of the youngest participants at age 18 and certainly one of the most inspirational.

Six years ago, Suris was diagnosed with retinitis pigmentosa, a disease that causes retinal degeneration and the gradual decline in a person's vision. It's typically found in adolescents and young adults.

"It was like telling someone they have cancer," said Suris, who lives south of Orlando, Fla. "You cry right there."

An estimated 100,000 people in the United States have RP, and most will be legally blind by age 40, with a central visual field of less than 20 degrees in diameter. It's a genetic disorder, but Suris is the first member of his family to be diagnosed.

"When we first found out, we barely talked about it," said his mother, Teresa Suris. "It was hard for the whole family. Every six months, we'd see the doctor and cry in the parking lot because there was no hope. But his attitude is 180 degrees from what it was before."

With his vision at 21/100, Suris already is considered legally blind. "Color, darkness, tunnel - the whole nine yards," he said.

"It impacts my life, but I still get stuff done. It's my motivation. It's a good thing."

Suris failed twice to make his middle school basketball team, and the disease took hold by the eighth grade, rendering that dream impossible. He ran cross country his last two years of high school, but only after his coach made arrangements for someone to accompany him on the course.

He'll receive the same consideration Saturday, with Washington resident Jake Phillips serving as his "leader" for the marathon, helping him through the city streets and warning of any potholes or other potential hazards. They were united through the CDifferent Foundation, based in Fort Lauderdale, Fla., which helps visually impaired athletes compete in events such as marathons and triathlons.

"I'll run with him and give him guidance, and in return, he'll give me encouragement to finish," Phillips said.

"It's amazing. Just to go out and train every day with the limitations he has takes a tremendous amount of guts and perseverance and spirit. It's definitely inspired me to go out and train harder."

Suris once ran a half-marathon, but nothing of this 26.2-mile distance. He began training in May and has covered 20 miles - a big reason his weight dropped from 250 pounds two summers ago to 190.

Saturday's race became a reality after a friend, former Baltimore resident Matt Benefiel, told him about it. Benefiel unleashed an impassioned sales pitch, and Suris decided to take a swing.

"He said, `It's a great town, great weather.' I looked into it and here I am, about to do it," Suris said.

One of the first steps was convincing his parents it would be safe. He's a freshman chemistry major at Stetson University in DeLand, Fla., soon to become a manager on the men's basketball team. His disorder hasn't closed off the world to him, but a marathon in another state seemed both a risk and a high reward.

"When he told me about this, I said, `Are you sure?'" his mother recalled. "My fear was because he needs someone to run with him. But at the same time, I was happy because it makes him feel good. It's good for his self-esteem. And it makes him more active and makes him watch what he eats. But my first reaction wasn't good."

Teresa Suris assisted in her son's training by riding a bicycle ahead of him as he ran. She needed to stay close so he could see the back of her shirt or the tire.

"I did 20 miles on that bike," she said, laughing. "I laid down on the sidewalk and people would say, `Is she all right?' And Edgar would say, `Yeah, we're just waiting for my dad to pick us up.' I felt bad. I'd see cars turning around.

"I fell down on that thing a few times and I'd have to yell at him, `Hold on, hold on.' But these are our children. If they're happy, we're happy."

No matter where Edgar Suris finishes Saturday, or even if he can't, there will be joy in his life. It's slowly returning. And the more he runs, the faster it arrives.